We believe that people with narcolepsy and their families and friends have the same rights to a full and rounded life as any other person without having to make this happen. The Charter is a written statement of these rights based on responses to an online survey of 302 people with narcolepsy and 149 supporters undertaken by Adelphi Research. The survey was made possible with support from Adelphi Research, Lincoln Medical Limited, The National Lottery Community Fund and UCB Pharma.
People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. That’s according to a new report published by The Neurological Alliance. The survey was the largest ever survey of people with neurological conditions in England with 10,339 responses. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.
In 2016 the Neurological Alliance ran a patient experience survey, gathering over 7000 responses, from patients with neurological conditions living in England (see previous blog post). The findings were used to campaign for better services and support for people with neurological conditions.
Narcolepsy UK would like you to help us by completing this survey from Disability Rights UK. Disability Rights UK have been asked by the MPs on the House of Commons Work and Pensions Work and Pensions Select Committee to help in its investigation of problems with Personal Independence Payment (PIP).
The MPs are keen to receive evidence of problems disabled people have experienced with the PIP claim, assessment and appeals process.
This year we have a great story to kick-off European Narcolepsy Day!
Narcolepsy UK have facilitated a meeting to initiate the creation of a European Patient Advisory Group to work closely with pharmaceutical companies on research and clinical trials of new medicines for Narcolepsy.
Even collectively, we would struggle to fund research but this way, we hope that we can provide our knowledge and assistance to make things happen faster.
The Lancet Neurology today published the results from a Phase III controlled trial of pitolisant in severely affected narcoleptic patients with cataplexy.
